Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Anyone Else With Lymphoma?

fran641

By fran641
in Related Issues & Disorders

Recommended Posts

fran641 Contributor
fran641
Posted

I was DX with celiac in 2009 (undiagnosed for 30 yrs) then in 2010 fNHL was found in colon during colonoscopy. PET scan showed it had spread to most of my body from ribs down. In 2011 After chemo and 3 month follow up testing it had returned in more aggressive form of DLBC lymphoma In my pancreas. Chemo again and radiation beat it back. I was wondering if anyone else around these boards had similar problems.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

Glad you are giving it a beating, Fran.  :) Best wishes.

GF Lover Rising Star
GF Lover
Posted

Hi Fran and Welcome!

 

It seems to me that the longer one goes un-diagnosed, the more damage does not reverse and the body does not completely recover.  I have cancer also, Metastatic Melanoma, diagnosed just 5 months after Celiac Diagnosis and also 4 AI Diseases diagnosed before Celiac diagnosis and 1 more diagnosed after Celiac and Cancer.  Things seem to keep going downhill at this point.  My AI system seems to always be flaring now.  I have Angina and COPD, arteries are thickening and my quality of life has gone to s$#&.  I also have granulomas growing on internal organs and more growing faster on my thyroid.  I've had surgeries and immunotherapy treatments with my Cancer and just can't seem to get to a point where I feel good and have kinda given up ever feeling good again.  When our health goes its gets depressing and exhausting and its a whole other fight to stay positive.  I have had to give up a lot of activities but have  picked up a few, like painting that are not so exerting.  

 

Just keep doing your best  :D , that's all we can do.

 

Wishing you well,  Colleen

icelandgirl Proficient
icelandgirl
Posted

((((Hugs)))) Fran and Colleen.

Gemini Experienced
Gemini
Posted

Fran and Colleen are the type of people who inspire so much inspiration and courage when we hear of your struggles. I went a long time undiagnosed also and ended up with 4 AI diseases but they pale in comparison with what you both deal with on a daily basis. Just keep on swinging that bat and don't give in! I hope 2015 is an uplifting and healthier year for you both!

nvsmom Community Regular
nvsmom
Posted

Well said.  :)

GF Lover Rising Star
GF Lover
Posted

Fran and Colleen are the type of people who inspire so much inspiration and courage when we hear of your struggles. I went a long time undiagnosed also and ended up with 4 AI diseases but they pale in comparison with what you both deal with on a daily basis. Just keep on swinging that bat and don't give in! I hope 2015 is an uplifting and healthier year for you both!

 

2015 is already better.  First full day of vacation in Florida starts today  B)

 

We all have our battles and all do our best.  I always told my kids....Just Keep Swimming!!!!  :D

 

Colleen

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Gemini Experienced
Gemini
Posted

2015 is already better.  First full day of vacation in Florida starts today  B)

 

We all have our battles and all do our best.  I always told my kids....Just Keep Swimming!!!!  :D

 

Colleen

Would you, by chance, be planning a visit to that rabble rouser Irish on your Florida vacation?  :P   I hope you have a wonderful time, whatever you do! As the Rolling Stones say....get your ya-ya's out!!!!!!!  :D

GF Lover Rising Star
GF Lover
Posted

Would you, by chance, be planning a visit to that rabble rouser Irish on your Florida vacation?  :P   I hope you have a wonderful time, whatever you do! As the Rolling Stones say....get your ya-ya's out!!!!!!!  :D

 

She's on my list !!!  So excied  :D .  This is the good stuff in life that makes the rest tolerable.  I walked 2 miles today, had a long break between the two and 1 mile was more of a stroll, but it felt great !!!  Ya-Ya's  ;)

Gemini Experienced
Gemini
Posted

She's on my list !!!  So excied  :D .  This is the good stuff in life that makes the rest tolerable.  I walked 2 miles today, had a long break between the two and 1 mile was more of a stroll, but it felt great !!!  Ya-Ya's  ;)

You two stay out of trouble, but of course, we will want details!  ;)  This trip will do you a world of good so enjoy every minute of it.

fran641 Contributor
fran641
Posted
  • Author

Colleen my dance with C pales in comparison with your on going fight. It is hard to keep that smile going at times. Glad you are going on vacation and hope you have a blast even if it is a slow stroll. Thanks everyone for your kind words. All of you have to keep putting one foot in front of the other to get to the other side when dealing with celiac and all is baggage.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Dawn Meyers
      - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

      I did some research and found out that vaccines put preservatives, sugar alcohols and metals in them. Which I have a intolerance too. I was supposed to do testing to find out metal's I was allergic to because I can't wear jewelry of any kind. Mayo felt I had other allergies also.
    2. Scott Adams
      - Scott Adams replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

      For individuals who have experienced negative reactions to the flu vaccine, there are alternative formulations that may reduce the risk of allergic responses. Traditional flu vaccines are typically produced using egg-based methods, which can pose issues for those with egg allergies. However, there are now several egg-free options available, such as cell-based...
    3. Dawn Meyers
      - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

      Mayo is great and yes I had the same experience. They take you seriously and they check everything. I to wish other Dr's cared that much. I sure hope it's not refractory celiac also.
    4. pdm1981
      - pdm1981 replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

      When I went to the Mayo Clinic back in 21' it was pretty amazing. The doctor sat and went over everything with me for a couple hours. I finally had to ask him if he had other patient to see. He said that not until he was done with me. I went back to my hotel room that day after some blood work and then got an itinerary of tests to be done over the next 5...
    5. Dawn Meyers
      - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

      Antibodies my number is in 500's. COVID hit and I was layed off from my job so no insurance (was in Arizona) so couldn't complete all the other testing they wanted to do. Back home and contacted Minnesota Mayo and they take my new insurance so considering going back in spring.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,850
    • Most Online (within 30 mins)
      7,748
    Roselle
    Newest Member
    Roselle
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Dawn Meyers
      Vaccines

      By Dawn Meyers · Posted

      I did some research and found out that vaccines put preservatives, sugar alcohols and metals in them. Which I have a intolerance too.  I was supposed to do testing to find out metal's I was allergic to because I can't  wear jewelry of any kind. Mayo felt I had other allergies also.
    • Scott Adams
      Vaccines

      By Scott Adams · Posted

      For individuals who have experienced negative reactions to the flu vaccine, there are alternative formulations that may reduce the risk of allergic responses. Traditional flu vaccines are typically produced using egg-based methods, which can pose issues for those with egg allergies. However, there are now several egg-free options available, such as cell-based and recombinant flu vaccines. Recombinant Vaccines (e.g., Flublok Quadrivalent): These are produced without the use of eggs and are grown in insect cells, making them a suitable option for individuals with egg allergies. Cell-Based Vaccines (e.g., Flucelvax Quadrivalent): These vaccines are also egg-free and are produced using mammalian cell cultures, which can be a safer alternative for those with egg allergies. Other Considerations: If you have had a reaction to a specific component of the flu vaccine (e.g., gelatin, preservatives, or antibiotics), discussing your medical history with a healthcare provider is crucial. They can help identify vaccines that exclude these ingredients. It's important to consult with an allergist or healthcare provider to determine the safest option based on your specific allergies and medical history. They can also provide guidance on pre-vaccination testing or desensitization protocols if necessary. Also, at @trents mentioned, could you be getting hidden gluten in your diet? Do you eat in restaurants? If so, this could be why you still have high gluten antibodies.
    • Dawn Meyers
      Vaccines

      By Dawn Meyers · Posted

      Mayo is great and yes I had the same experience.  They take you seriously and they check everything.  I to wish other Dr's cared that much. I sure hope it's not refractory celiac also.  
    • pdm1981
      Vaccines

      By pdm1981 · Posted

      When I went to the Mayo Clinic back in 21' it was pretty amazing. The doctor sat and went over everything with me for a couple hours. I finally had to ask him if he had other patient to see. He said that not until he was done with me. I went back to my hotel room that day after some blood work and then got an itinerary of tests to be done over the next 5 days. It was unbelievable. I had what would've been 4 years of testing back home done in 5 days. I went home at the end of 5 days and got my results a week later on a zoom call. EPI and rapid gastric emptying syndrome. I do have celiac disease but that wasn't the cause of my continued symptoms. Those people up there are great. Wouldn't that be amazing if all medical care was like that?  That's weird that the antibodies are that high. Hopefully it's not refractory celiac disease. Good luck.
    • Dawn Meyers
      Vaccines

      By Dawn Meyers · Posted

      Antibodies my number is in 500's. COVID hit and I was  layed off from my job so no insurance (was in Arizona) so couldn't complete all the other testing they wanted to do. Back home and contacted Minnesota Mayo and they take my new insurance so considering going back in spring. 
×
×
  • Create New...